The agonising pain women endure for EIGHT YEARS before they are diagnosed
Jenny Genge was 34 when she made the decision to have a hysterectomy.
For nearly two decades she’d suffered the agony of endometriosis and, after trying everything from hormone therapy to laser surgery, this dramatic solution was all that was left to her.
‘I’d had years of terrible pain,’ says Jenny, an administrator from Minehead, Somerset. ‘I was desperate for relief.’
'They were like crippling knife pains in my lower abdomen and back. Even walking caused this terrible pain in my legs,' said Jenny Genge of her periods
Jenny is one of around two million women in Britain with endometriosis.
The condition causes cells similar to the ones lining the womb to grow outside it — most commonly in the pelvic area, but in some rare cases they grow anywhere in the body, including the eyes, lungs and brain.
During a woman’s monthly cycle, her hormones stimulate the endometriosis, causing the cells to grow, then break down and bleed.
This internal bleeding, unlike a period, has no way of leaving the body and leads to inflammation, pain and the formation of scar tissue.
The condition raises the risk of infertility, because the ovaries and tubes can become blocked or damaged, and because endometrial cells kill sperm.
Endometriosis can appear at any age, but is most commonly diagnosed in women around the age of 30, when many start trying for a baby. While the cause is not clear, the condition is known to run in families.
For some, the symptoms can be mild, and controlled with the contraceptive pill — others are left in agonising pain and the condition is life-altering.
Jenny’s problems began when she was 15 and started to suffer heavy and painful periods.
‘They were like crippling knife pains in my lower abdomen and back,’ she says.
‘Even walking caused this terrible pain in my legs. Every month I used to curl up with a hot water bottle.’
After the surgery, Jenny is now pain-free for the first time in 20 years
She also fainted regularly and suffered from lack of energy as a result of anaemia caused by the loss of blood.
She had headaches and irritable bowel syndrome, too.
Endometriosis is usually diagnosed with a laparoscopy, when a medical telescope is used to look inside a woman’s abdomen and examine her fallopian tubes, ovaries and womb.
Jenny had two such investigations and at 19 received the news that she had endometriosis.
‘Once we knew what the problem was, my doctors tried everything,’ she says.
‘I had iron supplements and over-the-counter painkillers, reflexology, hormone therapy.
‘It all worked a little, but only for a short time. I did find that walking and swimming gently, if I was able to, made me feel better.
‘At one point I lost my job because I was continually tired and taking time off sick.’
When Jenny was 22, doctors recommended a hysterectomy — an operation to remove the entire womb and tackle the spread of the diseased cells.
‘I was distraught at the idea,’ she says.
Determined to find another way, she had laser removal of the endometrial cells, and underwent the more drastic excision of infiltrating endometriosis — when the cells are cut out of the body.
But the pain continued and, at the age of 34, she decided to go ahead with the surgery.
‘I was worried about going through yet another procedure and wasn’t even sure it would work, but it felt like the best option given all the difficulties I’d had,’ she says.
Her husband, Nick, 41, a local government officer, supported her throughout.
‘He knew all about my endometriosis, as we were friends before we started our a relationship,’ says Jenny.
In some ways, Jenny was one of the lucky women, because at least her condition was diagnosed quickly while many others miss out for years.
The same number of women have endometriosis in the UK as have diabetes. But, unlike diabetes, the condition is still relatively unknown and too often women have their symptoms mistaken for other conditions.
It takes an average 8.3 years for a woman to be diagnosed in the UK, according to a study by public health researchers at the University of Oxford.
This compares to just over three years in China (the fastest) and 11 in Italy (the slowest). Diagnosis takes longer in countries where the healthcare system is publicly funded — such as in Britain.
Public health consultant Dr Kelechi Nnoaham, from Berkshire NHS Primary Care Trust, led the study of 1,418 pre-menopausal women in ten countries.
He explains that diagnosis is often delayed because of a tendency to ‘normalise’ the symptoms.
‘Pelvic pain during a period, infertility, pain during intercourse and while opening the bladder or bowel are all symptoms shared by other conditions such as irritable bowel syndrome, cystitis and fibroids,’ he says.
‘This leads to a lack of urgency among medics to make a diagnosis.’
It was a lack of urgency that delayed Pauline Brooks’s diagnosis for 18 increasingly painful months.
She was 31 when she started to experience pelvic pain, heavy periods, exhaustion and pain during sex.
The same number of women have endometriosis in the UK as have diabetes. But, unlike diabetes, the condition is still relatively unknown
‘I went to my GP, and he gave me antibiotics for cystitis,’ says Pauline, a graphic designer from West London.
‘But it didn’t help — I was in so much pain I started to have to take days off work.’
She went back to the GP and was tried on antibiotics twice more. Another GP put the heavy periods down to Pauline using a contraceptive coil.
But her exhaustion only worsened; she fainted regularly and suffered from constant colds and viruses.
It took a year and a half for her to be diagnosed with endometriosis.
‘I was finally referred to a gynaecologist in August this year — I actually opted to see a consultant privately, as the referral time on the NHS was so long.
‘When I finally saw the consultant I was so exhausted and in so much pain I burst into tears.’
She underwent an ultrasound scan — which showed a 9cm cyst.
‘Two weeks later I had surgery to remove it and doctors discovered it was an endometrioma (a build-up of endometriosis tissue) and I was told I had endometriosis,’ she says.
The charity Endometriosis UK is working to highlight the condition among doctors.
As Helen North, of the charity, explains: ‘GPs don’t have it high enough up on the radar. And the Department of Health doesn’t think it’s a serious condition for women.’
However, the situation is improving. In the past couple of years the British Society for Gynaecological Endoscopy has set up a number of endometriosis centres around the country to treat women who suffer from severe forms of the condition.
Gynaecologist Alfred Cutner, who works at one of those centres at University College London Hospitals, says it is unfair to blame GPs, as they’re not specialists and are under constant pressure from NHS cuts to avoid making hospital referrals.
‘The problem with quoting long diagnosis figures is that you have to make the presumption that endometriosis was causing these symptoms all along,’ he says.
But he adds that patients should not allow GPs to ‘normalise’ their symptoms.
‘Having a bit of period pain is normal, but it’s not normal to have time off work and take painkillers each month. If you’re unhappy, ask for a second opinion.’
For Pauline, finally being diagnosed has made a huge difference — she is now taking the contraceptive pill, which has stabilised her symptoms.
‘I was worried for a long time, because no one spotted my symptoms,’ she says.
‘I feel such immense relief to finally know what was wrong with me.’
Meanwhile, Jenny is relishing the improvement in her life. After the surgery, she is now pain-free for the first time in 20 years.
However, she is not cured, as the endometrial cells can return.
‘I still get some symptoms, but not like I did. They don’t affect my day-to-day life and I don’t need any pain relief — I’m medication free.
‘I know the surgery isn’t a cure, but it has helped an enormous amount,’ she says.